Some will view this as an extreme act of selfishness while others will view this as an extreme act of selflessness. These words on paper are not to justify our actions. They are meant solely to help in our grieving process. We love our baby James Alexander with all our heart and soul. Hence the following...

From the moment of January 13th when our unplanned pregnancy was real, we were elated, surprised somewhat and overcome with bursting energy towards this little being within. A mother for the first time! I am really ready for motherhood, really honored.

For James Alexander's father, I will say he was simply beside himself with joy. He has a wonderful 19-year-old son from a previous marriage and cannot believe, that in his young 50th year of age, having the good fortune of becoming a father once again.

We knew though that it was not as carefree and normal as most pregnancies would be. Myself, at 36, had always denied serious consideration of giving birth, the main reason being a hereditary disease, of which I carry the gene, called Charcot-Marie-Tooth (CMT). This muscular disease affects the nerve to muscle relationship, mainly in the extremities. It may vary from mild loss of muscle control to severe crippling. As well, pain in varying degrees may occur. A base test question a neurologist will likely ask is, "Can you skate?"

Not only do I carry this dominant gene but I remain in my pedigree the only one who could pass it along. One of my three brothers has a severe case of CMT; however, as he is a Roman Catholic priest, the chance of him passing this along is very slim.

So, the search for answers, exploring historical and current updated knowledge regarding CMT, and generally uncovering every rock, nook and cranny began. Along with this search for knowledge came every test we felt necessary. Our two main queries throughout were: the best and worst scenario for our baby and the effect of pregnancy on me as a CMT mother.

So, we wait and we wait for blood tests to give us clues so we may proceed with amniocentesis. What genetics at this point has achieved is to identify if our unborn baby carries this gene or not. Unfortunately, they are yet unable to tell severity. The chances of carrying this gene are 50% no or 50% yes.

Again we wait. We stressfully, anxiously wait. Two weeks turns into three which turns into four. Finally, at 20 weeks, we are given the news that baby James does indeed carry the CMT gene.

Will I ever forget that moment? It was a nightmare. I was standing outside my body looking in on some miserable scene. This was it. We previously knew the results would be 50/50. We therefore worked toward our decision before these facts were shared with us. Once the dilemma became real, it threw us totally into indecision again. Yes, we have uncovered every rock we could dig up. Yes, we requested tests, tests, tests. So much knowledge can be dangerous.

Our bleeding, breaking hearts and souls would hold the key. The easy decision was not to make one. Go to term. The hard decision, the individual decision was to suffer baby James Alexander's possible pain now, out of enormous love for him, so he may never have to feel this himself in his life outside the womb. This decision was ours and ours alone.

For each of us we trust that with the help and support of loved ones around us and with the courage from the very deepest parts in our hearts and souls, we do as parents what we believe is best for our children.

James Alexander rests peacefully with other family members and friends with special prayers and blessings on May 7, 1994. We were able to hold him, caress and kiss him and will forever love our child, our son, James Alexander.

Whatever the decision, make it a happy one. Know you have decided the best for the three of you as a family. The strength in your convictions will move you forward while the doubt in them will disable you.

Excerpt from The Velveteen Rabbit
"What is real?...Does it mean having things that buzz inside you and a stick-out handle?"
"Real isn't how you are made," said the skin horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but really loves you, then you become real."
"Does it hurt?" asked the rabbit.
"Sometimes," said the skin horse... "When you are real you don't mind being hurt...But once you are real you can't become unreal again. It lasts for always."

Thank you baby James for making us real.